Sisters have stomachs removed to survive cancer

As if Lisa Bendle, 24, and her sister Ruth, 22, haven't been through enough in their young lives already.

During the next few months, they will have to make some agonising decisions.

The sisters from Hemel Hempstead, Hertfordshire, made medical history last year when both had their stomachs removed on the same day in the same hospital.

As reported in Good Health, they were found to carry a gene that puts them at

greater risk of stomach cancer - a disease that has already claimed the lives of several of their family.

The radical surgery almost certainly saved them from death. But with the rogue gene they carry putting them at higher risk of other life-threatening diseases, they now face the very real prospect of further drastic treatment.

The Bendle sisters carry a mutation of the E-Cadherin (CAD1) gene. As well as being implicated in stomach cancer, this gene is also thought to be responsible for some types of breast and bowel cancer.

As Lisa, a schoolteacher, explains: "Unfortunately, we now have to confront the fact that we have a higher than average risk of contracting breast cancer, and if we want to beat those odds, we have to start the screening process.

"We also have to consider screening for bowel cancer."

The girls are fully aware that in starting the screening process, they may have to undergo yet more pre-emptive surgery, such as a mastectomy, or have parts of their bowel removed and a colostomy bag fitted.

Their experience epitomises the mixed blessings of genetic testing - having a disease-causing gene does not mean they will definitely develop the disease.

An operation to cut out healthy tissue becomes a huge leap of faith, not least because the preventative treatment can also cause major health problems.

However, if they didn't take action, they would live with the constant dread of the disease. "Of course it hangs over us," says Ruth, a sociology and media studies student.

"We can't lead the normal, carefree lives that most girls our age have, which can be very upsetting.

"It can be particularly difficult when people moan away about having a cold or an upset stomach and I have to bite my lip. But I would have been the same a few years ago. They are normal - we are not."

According to genetic experts at the Addenbrooke's Familial Gastric Cancer Registry in Cambridge, the genetic mutation probably first appeared in the Bendles' paternal grandmother, who died when she was just 27.

The girls' father, David, died of the disease three years ago; their aunt passed away when she was 43, just a week before their cousin died, aged 18.

"Dad felt so guilty that he might be responsible for passing on such a dreadful legacy," says Ruth. "But it was just bad luck."

Lisa and Ruth had an endoscopic examination - where a tube with a camera is passed down the throat into the stomach - in December 2005, and then again in July 2006. The first tests came back clear, but in July they received the news that everyone was dreading.

"Even as we went into hospital, we were reasoning that it couldn't be both girls that were affected," says the girls' mother Lynn, 52, a teacher.

Sadly, the doctor explained that both girls had cancer cells in their stomachs.

Ruth was more affected than Lisa, who had only a few early-stage cancer cells, but for both, the only chance of survival was a gastrectomy - the surgical removal of the stomach.

The sisters were put under the care of world-renowned gastric surgeon Richard Hardwick, who carried out the surgery on both girls at Addenbrooke's Hospital.

"Most stomach cancers occur in elderly patients, but to have two young sisters diagnosed at the same time is unheard of," says Mr Hardwick.

The decision was the right one. When Ruth had her stomach removed in September 2006, the organ was found to be riddled with cancer. Fortunately, it hadn't spread from her stomach into her blood supply, but had she kept her stomach, she would have been dead within a year.

Since their operations, the girls have struggled to live a normal life. When the stomach is removed, the oesophagus is joined directly to the small bowel. Over time the small bowel, which does the job of absorbing food into the body, stretches to hold a reasonable-sized portion of food.

But this still means that food can only be taken in very small amounts, and it often becomes lodged in the small bowel, causing intense discomfort and sometimes vomiting.

The girls have to eat little and often to ensure they keep up their calorie intake.

"When we are not eating, we are recovering from eating, or planning the next snack," says Lisa.

"Basically, food has taken over our lives."

Despite this, both girls are finding it hard to maintain an adequate calorie intake. Lisa, for example, can manage a fruit smoothie for breakfast, a small piece of cheese and a cracker for a snack, a sandwich for lunch and a small handful of pasta for dinner.

Despite eating high-calorie food, such as milky coffee and sugary snacks, her weight has plummeted.

Pre-operatively, she was a size 14. Today, she is tiny, size eight, weighing just over eight stone, which is borderline underweight for her 5ft 6in frame. Emotionally, however, Lisa is doing well.

"It helps that I am in a supportive and stable work environment where people have known me a long time."

On the other hand, although Ruth looks more robust physically, she has struggled more in coming to terms with her new life.

Initially, her weight plummeted. Before the operation, she weighed around nine stone and was a dress size ten but by January this year, five months after the operation, she weighed just seven stone - wearing size four clothes.

"I truly hated being so thin," she says.

"I couldn't find clothes to fit me and felt that everyone was staring at me. I didn't recognise myself when I looked in the mirror."

Ruth also found it hard to fit back into university life.

"The student culture is geared to drinking and late-night curries - things I just can't do," she says.

But the girls have received promising news. "All but one of our cousins have now been screened and none of them carries the gene.

"If we manage to screen it out of our children through embryonic gene selection, this terrible disease, which has caused so much grief and misery, will be gone from our family for ever. That would be an amazing ending to the Bendle story," says Lisa.

"I'm quite happy for the doctors to keep removing bits of me, as long as it keeps me alive," says Ruth.

"Obviously, I am not happy about the prospect of undergoing a mastectomy - what 22-year-old girl would be? But I trust the doctors implicitly. If they say I need surgery again, then I would have it without hesitation."

For more details on how to help beat cancer by leaving a gift in a will to Cancer Research UK, call 020 7121 6697 or visit www.cancer.org.uk/legacies